YPWD Services - what do you think?

[anna76]

Hi everyone!

as a Community Memory Nurse in Hampshire, I feel privilaged to be a part of so many people's lives, to know their stories, their joys and their heartaches. I'm relatively new to the post, but have 8 years experience of working with people with dementia.

I am hoping that I can gain some insight from you, in relation to the services you have accessed as YPWD, as my team are in the embryonic stages of developing such a service for our local area.

How easy was it to access services, and were referrals appropriate?

What particular issues were raised / most troublesome / difficult for you?

What support was available to you / your relative, as a patient / carer?

What services would you like to see in place for you, now and in the future?

Do you feel you had enough guidance from professionals regarding finances/benefits/driving/employment issues/other?

If you feel able to offer any feedback, I would be most grateful, as this may help sculpt the face of a new service for YPWD like yourselves.

Take care of yourselves,

Anna x

 

[Brucie]

Thanks for posting on TP; I'm in Hampshire, on the Surrey borders, though my experiences relate primarily to the period 1991 - 2001, as my wife is now in permanent nursing care.

How easy was it to access services, and were referrals appropriate?

at the time, access to diagnosis was mostly through private health care as there appeared to be no recognition that younger people could suffer from dementia in primary care.

What particular issues were raised / most troublesome / difficult for you?

getting any help, advice, understanding

What support was available to you / your relative, as a patient / carer?

very little. We did manage to get someone to sit with my wife for a couple of hours each week - for a while. The Day care provision proved hopelessly unable to cope with someone outside the 'normal' demographics for dementia, and my wife was told not to come back. Respite was totally impractical and geared to older people,where respite could be planned many months in advance. For a partner still in work, and also trying to care for his wife at home, there is a need for short notice respite, for example when there is business abroad that requires a couple of days away.

What services would you like to see in place for you, now and in the future?

too late now for us, but mostly services that recognise the needs of younger people - short notice respite, day carers, day care centres

Do you feel you had enough guidance from professionals regarding finances/benefits/driving/employment issues/other?

is 'none' regarded as being 'enough'?

Realistically, things may have improved since 2001, but I wonder.....

 

[anna76]

Hi Bruce,

thank you for your feedback. I find it so upsetting that people like you and your wife found it so difficult to get the right help you both desparately needed. Your comments are of great value, and I will take them into consideration when we begin forming our new service.

Hopefully, five years on things have, and are, improving. But they still have a long way to go! In my professional capacity, I am hoping to actively make a change, at least on a local level. As a person, my passion in dementia care will surely spur me on.

Take care, Bruce, hope to hear from you again.

Anna x

 

[Lynne]

Anna, you're a brave woman to put yourself up into the firing zone with a question like that. (And I mean that literally & sincerely) I am somewhat surprised that you only received one reply - or perhaps others PM'd you.

Whilst I'm not yet in the situation of trying to pull together any sort of assistance or care-package, one of the major things I have learned from this forum is that there is a HUGE inconsistancy about what is available, and how much difference locality & the individual PCTs make to what's available in a particular area (the 'postcode lottery', I suppose). Various organisations, whilst well-meaning in their own right, do not network or link up with other bodies which are supposed to form the care 'package', unless you are very lucky.

If you can bring about any change in your professional capacity, I hope you remember AD when you become Health Secretary (and when you get there, please ban N.I.C.E.)

 

[anna76]

Hi Lynne,

good to hear from you.

I don't feel particularly brave!! At the moment, I feel like I'm looking at Everest and wondering how the hell i'm going to reach the summit, which is totally obscured by cloud!

I agree, that services are pretty "hotch-potch" and network poorly. In a previous post, I had a real battle on my hands to find (a) somewhere that offered day care for YPWD, and then (b) to find someone to agree to fund it - under 65, not older people's service responsibility; got dementia, not adult mental health responsibility. It's a real nightmare, even as a professional. As a carer or YPWD, it must be hell - where do you go, who do you ask?? How do you avoid being lost in the cosmos which falls between service providers?

I take your points on board - thank you, and again, will take them forward with me in my quest!!

Take care,

Anna x

 

[Norman]

Anna


Quote
It's a real nightmare, even as a professional. As a carer or YPWD, it must be hell - where do you go, who do you ask?? How do you avoid being lost in the cosmos which falls between service providers

It isn't any easier as a carer of older people.
Norman

 

[connie]

Anna, heartily agree with Norman, it just isn't easy for anyone.

However, on the YPWD front, here in Essex there is no care home for younger people, and there are no dedicated day services.

We do have access to a day care centre which tries very very hard to cater for younger people, but can really only manage full services for YP on one day a week.
Lionel was lucky enough to have a place at the centre, but a 20 mile each way journey. It was a lifeline to us.

Connie

 

[May]

Hi Anna
I'm still struggling to get some form of respite care/help for my Dad (Mum's 24/7 carer, they are 79) since last Sept/Oct ..ish. We cope alone at the moment in a situation that seems to deteriorate day by day, and when I call CPN or support services team leader it the same old, same old! 'Well, we do have a waiting list... you are second on it now (we were fourth when we started)....we can't jump the queue'...I KNOW ALL THIS will somebody please, just give me a straight answer, don't tell me in December that it will be end of January, early February at the latest, possibly, just say for heavens sake that you don't know when it will be but you will update on a regular basis. And yes, I know the professionals are under stress in this scenario, budgetary constraints etc, etc but a bit of honesty wouldn't come amiss. As you may have gathered by now I spoke to them again today...I honestly feel that banging my head against a brick wall might bring better results at this point in time...
Hey ho...... I'm off to see the CPN on Friday morning. My Dad is adamant that he wants to look after Mum at home.....I can understand that...they've never been parted ,he's her rock, even now, I have a feeling if Mum does go into care the decline would be rapid, more so than being at home (even though she doesn't recognise it). The CPN told me the best thing we can do is start looking at care homes... why do I get the feeling that this is the 'easy' option............sorry I've rambled but the head of steam has built up and I'm so angry that we do not appear to have joined up services and the best thing the professionals can do is refer me to the voluntary sector!
As Lynne said it's a postcode lottery. Don't forget by the way Anna, ban N.I.C.E!

 

[anna76]

Hi everyone,

thanks for your feedback.

Norman, I hope you don't think I was ignoring the struggles of all carers - I know how difficult it is to care for another person, no matter what age they are. I spend alot of time in my job with carers, looking at issues that effect them, difficulties they face and how they might be able to overcome them - or at least learn to live with them, with a shoulder they know they can cry on.

Connie, your situation sounds familiar! We have one day care service in our area which caters specifically for under 65s, but again, getting there is a problem. As far as I'm aware, it's the only service which offers respite in this age group aswell. But like you say, it's a lifeline.

May, don't be sorry for "rambling" - everyone needs to let off steam somehow. I appreciate how frustrating it is when you need to talk to someone NOW, and that someone just isn't available. I can also see your way of thinking about your Mum's situation - a move to residential care probably would result in a more rapid deterioration. However, as carers you and your Dad need to look after yourselves as well, and look realistically at how you can manage.

Your point about honesty is a powerful one. Sometimes professionals can become scared of being truthful for fear of the consequences. Realistically, by not being truthful, the consequences in terms of carer stress can be far worse.

The overwhelming point that is coming up in most posts here is lack of communication and networking between services, which is certainly something I will be addressing in our new service development.

Thank you all again,

look after yourselves, hope to hear from you soon

Anna x

 

[Gilly]

M

Thanks for posting on TP; I'm in Hampshire, on the Surrey borders, though my experiences relate primarily to the period 1991 - 2001, as my wife is now in permanent nursing care.at the time, access to diagnosis was mostly through private health care as there appeared to be no recognition that younger people could suffer from dementia in primary care.getting any help, advice, understanding very little. We did manage to get someone to sit with my wife for a couple of hours each week - for a while. The Day care provision proved hopelessly unable to cope with someone outside the 'normal' demographics for dementia, and my wife was told not to come back. Respite was totally impractical and geared to older people,where respite could be planned many months in advance. For a partner still in work, and also trying to care for his wife at home, there is a need for short notice respite, for example when there is business abroad that requires a couple of days away.
too late now for us, but mostly services that recognise the needs of younger people - short notice respite, day carers, day care centres
is 'none' regarded as being 'enough'?

Realistically, things may have improved since 2001, but I wonder.....

We live in North East Lincolnshire and my husband was diagnosed in 1998 aged 51, I was 44. Basically the Neurologist advised us that there were very few services available and they were mainly for older people. We were on our own. My husband still lives at home with me and we do get help now but it was hard to come by. Mainly I think it is because people do not realise(Professionals included) how different it is for a younger person and their family.
I am also dismayed that when Alzheimers is discussed as it is at the moment due to Coronation St. that hardly any mention is made of younger people when the statistics are trotted out. Indeed the facts presented by Clive Evers on the This Morning show, Monday 13th March were totally incorrect!
I also get quite upset by people always mentioning aggresive behaviour, i know that this can be a symptom but not for everyboby, my husband is more likely to hug you to death and he is always laughing and smiling.
Noboby has ever asked us what could be do to help our situation and after nearly 8 years i am not holding my breath for any major improvements.

 

[connie]

Hello Gilly, welcome to TP.

Yes it is hard for all concerned, and the difficulties which YPWD face are vast.
No two cases are the same, so of course the storyline on Coronation Street will not fit many cases exactly, but the fact that it is raising awareness must be a positive step.

Thanks for sharing your story with us, and hope you post again soon. Connie

 

[tessie]

My mum is 63 has AD and lives alone in Hampshire, I am told that we cant do much with her as shes under 65, just hope she doesnt mind wasting away at home for another 2 years.

 

[Colin Cosgrove]

Hi Tessie,

Where in Hampshire does your mother live?

There are services for younger people with dementia dotted around the county, and even if there isn't anything local to her, the nearest Alzheimer's Society branch may offer something that she could link into.

Let me know if you want me to look into this for you.

All the best,
Colin

 

[connie]

Hi Tessie, welcome to TP.

I accept that there may be no dedicated services for under 65's in your area, but even so there are things out there, but you have to badger SS to get things started.

Has mum got a CPN, or Social worker, if not ask the doctor to put something in place.

The louder we shout the more is being done. Take care, Connie

 

[tessie]

we've just had a cpa and ss will go to panel to see if mum can go to a day centre where they are all in their 80's and have dementia, 2 times a week, it will include transport to pick her up and drop her off to a empty home.

I am supposed to be pleased with this offer (if we get it). Am I expecting to much from the 'care' services? I feel that I am expected to give up my life to move in and look after mum if I want her to have any quality of life whilst she is still aware or totally detach myself and not question her level of care from ss.

 

[connie]

Hello Tessie, know what you mean about day centres mainly being for the elderly.

We are fortunate that we have one centre which has managed to dedicate just one day a week to younger people. It is over 20 miles away, but Lionel was fortunate enough to get a place there.

No there will never be enough services offered, but (I feel) once you accept something, even with reservations, you are in the system.

Love Connie